Data Protection Using Polymorphic Pseudonymisation in a Large-Scale Parkinson’s Disease Study

This paper describes an advanced form of pseudonymisation in a large cohort study on Parkinson’s disease, called Personalized Parkinson Project (PPP). The study collects various forms of biomedical data of study participants, including data from wearable devices with multiple sensors. The participants are all from the Netherlands, but the data will be usable by research groups worldwide on the basis of a suitable data use agreement. The data are pseudonymised, as required by Europe’s General Data Protection Regulation (GDPR). The form of pseudonymisation that is used in this Parkinson project is based on cryptographic techniques and is ‘polymorphic’: it gives each participating research group its own ‘local’ pseudonyms. Still, the system is globally consistent, in the sense that if one research group adds data to PPP under its own local pseudonyms, the data become available for other groups under their pseudonyms. The paper gives an overview how this works, without going into the cryptographic details.